Speaker 1: Rube.
Speaker 2: I'm not okay. I don't know what's going on. I've
Speaker 2: never had this happen before, and I don't know where
Speaker 2: to go and what to do.
Speaker 3: I said, Michelle's having a serious problem. You have to
Speaker 3: get over there. You need to go now.
Speaker 4: This is an invisible illness.
Speaker 5: And that's what I think makes it so difficult, because
Speaker 5: they come in and they have all these complaints, but
Speaker 5: they look fine.
Speaker 2: I was standing in the mirror and I just remember
Speaker 2: looking at myself and I said out loud, there's no
Speaker 2: way you're going to make it through this.
Speaker 1: How terrifying would it be to fight an unknown enemy,
Speaker 1: one you didn't recognize and didn't see coming. What if
Speaker 1: that enemy was coming from within a disease that even
Speaker 1: doctors couldn't identify. Nearly half of Americans suffer from some
Speaker 1: chronic illness, and many struggle for an accurate diagnosis.
Speaker 4: These are their stories.
Speaker 1: I'm Lauren Bray Pacheco and this is symptomatic.
Speaker 2: I am Michelle Shapiro, and I'm an integrative and functional
Speaker 2: registered dietitian.
Speaker 1: Michelle is the kind of person who never meets a stranger.
Speaker 1: She speaks with enthusiasm, confidence, and is undeniably a New Yorker.
Speaker 1: So you grew up at Queen's. Tell me a little
Speaker 1: bit about your childhood and life growing up.
Speaker 2: I grew up in one of the most diverse neighborhoods
Speaker 2: in the entire world. I think my high school was
Speaker 2: the most diverse high school in the entire world at
Speaker 2: one point. And because of that, I had such a
Speaker 2: rich experience in life in just about every way. Socially,
Speaker 2: I had a really beautiful life. But I had, in
Speaker 2: my opinion, like this very ideal childhood where all of
Speaker 2: my best friends were the children of my parents' best
Speaker 2: friends and my sister's best friends. I really grew up
Speaker 2: in community that was deeply inclusive and also just rich
Speaker 2: in diversity in every way possible.
Speaker 1: You mentioned your sister, Jennifer, and I know you too
Speaker 1: are incredibly close. Tell me a little bit about your
Speaker 1: relationship and why, in addition to being sisters, you're also
Speaker 1: best friends.
Speaker 2: I can't even think about her without crying. She is
Speaker 2: the tougher, grittier, cooler version of me, and she is
Speaker 2: my true blue soulmate, my sister.
Speaker 3: I am Jennifer Shapiro, and I am Michelle's big sister.
Speaker 1: Jennifer is almost three years older than Michelle, but the
Speaker 1: pair have always been inseparable. Tell me a little bit
Speaker 1: about your camaraderie from the get go. What were you
Speaker 1: two like growing up?
Speaker 3: I think that a lot of people think, because we're
Speaker 3: two girls and we are so close in age, that
Speaker 3: there would be a lot of like competition between us.
Speaker 3: But we never really in our entire life that we
Speaker 3: never really had a lot of the disagreements that other
Speaker 3: sisters frequently had, to the point where we grew up
Speaker 3: in a house that had extra bedrooms and we shared
Speaker 3: a room until I left for college, just because we
Speaker 3: wanted to.
Speaker 1: I love that for somebody who hasn't had the pleasure
Speaker 1: of meeting your little sister, how would you describe Michelle magic?
Speaker 3: It's all the Michelle magic. Everybody wants a piece of Michelle.
Speaker 3: Everyone wants to have her attention and feel her kindness
Speaker 3: and her empathy all the time. Like we can be
Speaker 3: in a public place and all of a sudden, the
Speaker 3: waitress will just be telling her about something that happened
Speaker 3: when she was three. Everyone wants to bear their soul
Speaker 3: to Michelle.
Speaker 1: This natural gift, a warmth that invites has always been
Speaker 1: Michelle's for power and strength. Growing up, Michelle never had
Speaker 1: any trouble forming friendships based on authentic connection. It hadn't
Speaker 1: even occurred to her that surface level judgments may stand
Speaker 1: in the way of her being accepted.
Speaker 2: One thing that was kind of different about me growing
Speaker 2: up was that I always occupied a larger body.
Speaker 3: Michelle and I frankly were both overweight a lot of
Speaker 3: our childhood and adolescens, Michelle particularly, but I definitely was
Speaker 3: the largest out of my friends.
Speaker 2: It really wasn't much of a problem in Queen's versus
Speaker 2: other places. I think people are judged on a different curve.
Speaker 2: I think genetics played a role. And then also we
Speaker 2: came from a household where love our mother more than anything,
Speaker 2: but she didn't cook, and just in that I had
Speaker 2: leaned on highly processed foods, we had, you know, trauma
Speaker 2: like everyone else did growing up. That led to ME
Speaker 2: using food as an emotional tool.
Speaker 1: When it was time for Michelle to go a way
Speaker 1: to college, she began to fear that she would be
Speaker 1: quickly evaluated by her peers based merely on what they
Speaker 1: saw that.
Speaker 2: Was going to the universe. Dave Delaware and I realized, hmm,
Speaker 2: They're not going to instantly know me for who I am.
Speaker 2: This is a much more homogeneous place where people are
Speaker 2: going to really judge you based on first appearances. And
Speaker 2: I realized going into college, I need to lose weight,
Speaker 2: and I need to lose weight quick if I'm going
Speaker 2: to be able to do the things I want to
Speaker 2: do and socialize in the ways I want to do.
Speaker 2: I lost close to one hundred pounds in the year
Speaker 2: leading into college. How did you do that? Just really
Speaker 2: severe calory restriction. And I also went on a radical
Speaker 2: vegan diet. I think my vegan diet was also a
Speaker 2: little bit of disordered eating in disguise. I would say.
Speaker 3: I think that it was hard because she knew deep
Speaker 3: down that what she was doing to her body by
Speaker 3: not eating was not healthy, but she was getting so
Speaker 3: much like external praise because she was someone that had
Speaker 3: always been, you know, like the big girl in the group.
Speaker 3: I think it was hard for her to like wreck
Speaker 3: and sile.
Speaker 1: Those she was gaining the kind of social capital that
Speaker 1: often comes with weight loss in our society. Michelle went
Speaker 1: off to college and started to experience health issues.
Speaker 2: I thought, again, like anyone else, that when you lose
Speaker 2: weight all of your health problems go away and everything's perfect,
Speaker 2: And I had the exact opposite experience what happened. I
Speaker 2: would describe my time in college as being incredibly sick.
Speaker 2: I went from being this hypersocial person with a massive
Speaker 2: social network and support system to someone who had debilitating
Speaker 2: panic attacks and could barely leave my dorm room. I
Speaker 2: was very dizzy a lot of college too, and I
Speaker 2: had acid reflux and severe gut issues.
Speaker 4: Psychologically, that must have been grueling.
Speaker 2: Yeah, I really disliked panic attacks of all symptoms, and
Speaker 2: anyone who's experienced chronic panic attacks will tell you I'll
Speaker 2: take most things over a chronic panic attack.
Speaker 1: Can you explain that to somebody who hasn't had a
Speaker 1: panic attack?
Speaker 2: It feels like you're going to die, I guess is
Speaker 2: the most specific way I can explain it. And it
Speaker 2: feels like every single cell in your body is instructing
Speaker 2: your brain that you're going to die and there's absolutely
Speaker 2: no way out of it. That's what it feels like
Speaker 2: in the moment, is that there is. It's like you
Speaker 2: wouldn't be able to run, you wouldn't be able to
Speaker 2: use any of those emergency mechanisms because your entire body
Speaker 2: is just trying to tell you that you're going to die.
Speaker 2: It feels like the most extreme version of any symptom,
Speaker 2: your heart pounding, sweating, terror, terror at the highest level.
Speaker 2: As a person who's always felt like I can get
Speaker 2: through anything, this was one of the first times in
Speaker 2: my life where I was like, I don't know if
Speaker 2: I'm going to make it through this.
Speaker 1: Did you seek medical treatment at the time, and what
Speaker 1: were you told by doctors?
Speaker 2: I absolutely sawt medical treatment for the panic attacks. I
Speaker 2: went to any doctor, the health center and a doctor
Speaker 2: I could off campus, and their answers were, you have anxiety,
Speaker 2: you have a permanent panic disorder, you can take medication
Speaker 2: for life.
Speaker 3: I was away at college, but I remember there was
Speaker 3: like things with her needing to constantly go on like
Speaker 3: drives with my dad to calm herself down, knowing exactly
Speaker 3: how long it would take her to get home, like
Speaker 3: she always wanted to be sure that if she did
Speaker 3: have like a panic attack, that she would be able
Speaker 3: to like get home and get back to like a
Speaker 3: safe place and regulate her nervous system.
Speaker 1: Though she was experiencing debilitating anxiety, Michelle made it through
Speaker 1: school and inspired by her own weight loss journey, decided
Speaker 1: to pursue a career as a dietitian.
Speaker 2: And to be honest with you, Lauren, and I went
Speaker 2: in to school to be a dietitian, to learn like
Speaker 2: the secrets of weight loss, even though I had already
Speaker 2: lost the weight. A lot of dietitians actually suffer from
Speaker 2: disordered eating and eating disorders disproportionately to other practitioners. In
Speaker 2: the beginning, that was the transparent goal. It wasn't until
Speaker 2: I graduated that I really understood what my mission and
Speaker 2: my purpose was.
Speaker 1: After graduating, Michelle gets a job working in nursing homes.
Speaker 1: The drive to work is a long commute, and suddenly
Speaker 1: she begins to notice new terrifying symptoms.
Speaker 2: I remember walking through the hallways and holding on to
Speaker 2: the walls because the dizziness was so extreme for me.
Speaker 2: It's unsteadiness, but also a lot of visual disturbance. It's
Speaker 2: just like a whoa, whoa who kind of feeling.
Speaker 1: Here's her sister, Jennifer's recollection of that time.
Speaker 3: She was driving to the Bronx from the border of
Speaker 3: Queens and Long Island, so you know, it was forty
Speaker 3: five minutes to an hour and I would remember she
Speaker 3: would come out of the car and look like totally
Speaker 3: depleted as a person, like dizzy, tired, like stumbling, and
Speaker 3: she kept saying like, I'm having so much trouble driving,
Speaker 3: I'm getting so tired. And at first it was like
Speaker 3: confusing as we were like why, like you've driven back
Speaker 3: and forth to Delaware, Like it just started kind of
Speaker 3: slowly happening, and then she kept having like very severe
Speaker 3: dizziness bells. I remember there was like a time that
Speaker 3: there was a candle holder on the wall at my
Speaker 3: mom's house and she just like walked right into it,
Speaker 3: and I was like, what are you doing? Because she
Speaker 3: couldn't even like see straight really like she was so
Speaker 3: dizzy and out of it, and she really hit her
Speaker 3: head hard.
Speaker 2: During those times when I was dizzy, I would also
Speaker 2: get this like singy feeling. There's a tremor that kind
Speaker 2: of happens. It feels like ants crawling onto your skin
Speaker 2: a bit, and you have to understand, I'm at work,
Speaker 2: I'm dizzy, I have no idea where it's coming from,
Speaker 2: and I have no tools to fix it.
Speaker 1: After a few years at the nursing home job, Michelle
Speaker 1: takes a job as an in house dietician for a
Speaker 1: company in Manhattan with dreams of opening up her own
Speaker 1: private practice. Michelle is working overtime to meet with clients
Speaker 1: after hours, and the dizziness, now coupled with brain fog
Speaker 1: and fatigue, will not stop.
Speaker 2: I worked from seven to three, and I saw private
Speaker 2: practice clients from four to ten every day, so I
Speaker 2: was working from seven am to ten pm. I had
Speaker 2: started to dip my toe into the functional medicine world
Speaker 2: a little bit, and I was like, Oh, this must
Speaker 2: be a dreamal fatigue, This must be HPA access dysregulation,
Speaker 2: this must be burnout. So I was trying to fix,
Speaker 2: like put those root cause pieces together. You can chalk
Speaker 2: anything up to burnout, right, So I was like, Okay, listen,
Speaker 2: you're working like one hundred hours a week, so this
Speaker 2: is why this is what's happening. But I tolerated feeling
Speaker 2: awful so fascinating because your symptoms just took a backseat
Speaker 2: to your career.
Speaker 1: And so while your symptoms are escalating, so are your
Speaker 1: responsibilities and your workload.
Speaker 4: There had to have been like a.
Speaker 1: Crash in twenty eighteen and twenty nineteen. Michelle's symptoms continue
Speaker 1: to escalate. She begins to experience headaches that will not
Speaker 1: go away, gas, trou intestinal issues, and persistent insomnia. After
Speaker 1: discovering she's been exposed to toxic mold in her apartment,
Speaker 1: she begins mold detoxes through functional medicine doctors. But somehow
Speaker 1: this treatment that was meant to help her feel better
Speaker 1: seems to be making her symptoms exponentially worse. And then
Speaker 1: in twenty twenty one, Michelle gets COVID.
Speaker 2: That was a whole different ballgame again. I mean, I
Speaker 2: was unbelievably sick. There was new pain symptoms in all
Speaker 2: of my joints. I feel like my joints are moving
Speaker 2: in a way that they're not supposed to. There was
Speaker 2: something with my neck, There was something with my back.
Speaker 2: I would throw my back out all the time, even
Speaker 2: though I was like an active person. My knees would
Speaker 2: constantly be hurting. And there's a distinct feeling of dizziness
Speaker 2: what I would call instability that I started to recognize
Speaker 2: as being related to my neck. So I'd prop up
Speaker 2: like ten pillows behind me, propped up on pillow mountain
Speaker 2: in bed with an f brace on because I couldn't
Speaker 2: lie fully back.
Speaker 1: An ever growing list of symptoms seemingly disconnected, and unfortunately
Speaker 1: it was all about to get much, much worse.
Speaker 2: The crash, the real big crash, came in twenty twenty two.
Speaker 2: I did end up moving from Manhattan to New Jersey.
Speaker 2: I'm about five minutes outside of Manhattan, but still counts
Speaker 2: because I needed to have a car again. Once I
Speaker 2: started driving again, those old school dizzyness symptoms started coming
Speaker 2: up again. So I ended up going to a chiropractor
Speaker 2: who was about a block away from my apartment. They
Speaker 2: were feeling my neck and they said, you know, in
Speaker 2: my twenty years of experience, you have the tightest neck
Speaker 2: I've ever felt. They were digging into my neck to
Speaker 2: try to loosen everything. I got down the stairs after
Speaker 2: the chiropractor's appointment, and I noticed my heart was pounding
Speaker 2: like through my ears, and I remember the thoughts pounding
Speaker 2: inside of my head going, you can't walk. If you
Speaker 2: walk one more step, you're gonna die. If you've moved back,
Speaker 2: you're gonna die. I get down, Get down, Get down,
Speaker 2: get down, like almost like I was inn a war movie.
Speaker 2: So I got down on all fours outside of the
Speaker 2: chiropractor and I told my sister.
Speaker 3: She was like, I can't walk, I can't move. Every
Speaker 3: time she would stand up, her blood pressure was dropping
Speaker 3: lower and lower and lower.
Speaker 2: I'm not okay. I have to tell you right now.
Speaker 2: I'm seriously not okay. My body is not okay. I
Speaker 2: just left disappointment. I don't know what's going on.
Speaker 3: I'm scared. I can't be alone.
Speaker 2: I've never had this happen before, and I don't know
Speaker 2: where to go and what to do.
Speaker 1: We'll be right back with Symptomatic, a Medical Mystery Podcast.
Speaker 1: Now back to Symptomatic, a medical mystery podcast. Michelle Shapiro
Speaker 1: has spent years dealing with seemingly unprompted bouts of dizziness,
Speaker 1: extreme anxiety to the point of panic attacks, gas, true
Speaker 1: intestinal issues, insomnia, headaches, and joint pain. An appointment with
Speaker 1: a chiropractor, Michelle is left unable to walk, literally crawling
Speaker 1: to the closest urgent care five city blocks away.
Speaker 2: My heart was pounding like through my ears, but I
Speaker 2: got down on all fours outside of the chiropractorics. I
Speaker 2: was trying to get breath in. I was laying on
Speaker 2: the floor, so I called my sister and I said,
Speaker 2: I have to make it to the yar because I
Speaker 2: couldn't even make it back upstairs. And I said, and
Speaker 2: I'm just gonna call on the cement to go to
Speaker 2: the first med, which was like five blocks away.
Speaker 3: I was like, you have to do what you have
Speaker 3: to do. I will stay on the phone with you.
Speaker 3: We'll have our dad come to get you after this.
Speaker 3: But you are going to have to drop down and
Speaker 3: we're going to take it breath by breath, and you
Speaker 3: are going to get there.
Speaker 2: And I would stop every like five steps, and I
Speaker 2: was like, I can't do this. I can't do this.
Speaker 2: And she's like, you have a few more steps. You
Speaker 2: have a few more steps.
Speaker 1: Are you frantically kind of texting your father as you're
Speaker 1: coaching her?
Speaker 3: I think I called him and I was just like, Daddy,
Speaker 3: you have to go to Michelle right now. Michelle's having
Speaker 3: a serious problem. You have to get over there. She's
Speaker 3: going to be at the first med. I'll text you
Speaker 3: the address, but you need to go now.
Speaker 2: When you're in that state, you don't know if walking
Speaker 2: or stopping or sitting is going to make it better,
Speaker 2: because when you're sitting, you also feel the heart pounding
Speaker 2: and dizziness so much, and you're so aware of the symptoms,
Speaker 2: so you just feel like, I literally do not know
Speaker 2: which way to go. It's psychologically and the physical terror experience.
Speaker 1: You must have been terrified.
Speaker 2: I have to tell you, Lauren, that was not a
Speaker 2: good day for me. Yes, I was completely completely terrified,
Speaker 2: and so I made it to the city MD on.
Speaker 2: I walked in on the floor and I pulled myself
Speaker 2: up and I said, I'm having some sort of a
Speaker 2: heart episode. They did every positional change they could to
Speaker 2: try to lower my heart rate. Eventually they said, this
Speaker 2: looks like some high heart rate, high blood pressure episode,
Speaker 2: but if your baseline is not bad, I would get
Speaker 2: evaluated for your heart Essentially, I'm going to write you
Speaker 2: a per panel all prescription. I would recommend you take it.
Speaker 2: So they had me take it for my blood pressure
Speaker 2: and my heart rate to come down and then set
Speaker 2: me home. Essentially, they were as helpful as they could be,
Speaker 2: but they were like, we don't really know. Maybe you
Speaker 2: should investigate pods pots being pushural or the thestatic techy
Speaker 2: cardia syndrome. Where do you go from there?
Speaker 1: I mean, having had an episode where you have to
Speaker 1: crawl five city blocks.
Speaker 2: Yeah, it was. It's I have to laugh, but it
Speaker 2: was really quite bad, Lauren. It was really quite bad.
Speaker 1: After leaving Urgent Care on that terrifying day, Michelle's symptoms
Speaker 1: only get worse, as if a switch flicked on that
Speaker 1: cannot be turned off.
Speaker 2: I would have violent tremors and insomnia all night. If
Speaker 2: I had to go to the bathroom, I had to
Speaker 2: literally lift myself up with my arms onto my computer
Speaker 2: chair and wheel myself put myself on the floor crawl
Speaker 2: because if I put my feet on the ground, my
Speaker 2: heart rate fluctuations were so severe that I would then
Speaker 2: be an episode for days. So I was like, it's
Speaker 2: just not worth it. While I was figuring that out,
Speaker 2: I also had that adrenaline response, that insomnia response, that
Speaker 2: diarrhea response. I never really felt hopelessness until that moment.
Speaker 3: She was like strapping on a neck brace and seeing
Speaker 3: forty clients a week. In some ways, her life was
Speaker 3: so severely impacted, but in others she's such a strong
Speaker 3: and like resilient person that she was just fighting her
Speaker 3: way through. Like I remember once I took her for
Speaker 3: a colonoscopy. You know, they didn't really find much, and
Speaker 3: I remember her talking to the GI doctor after and
Speaker 3: being like, I'm telling you there is something wrong, and
Speaker 3: it's like, do you think your son or anybody else
Speaker 3: would want to feel so dizzy that they are crawling
Speaker 3: in the street. You wouldn't wish it on your worst enemy.
Speaker 3: So it's so disheartening when people didn't believe Michelle or
Speaker 3: understand the severity of it.
Speaker 1: Throughout this time, Michelle has gotten engaged, beautiful milestones in
Speaker 1: her life taking place alongside he's incredibly debilitating set of symptoms.
Speaker 1: In the spring of twenty twenty two, Michelle has a
Speaker 1: bachelorette party and it does not go to plan.
Speaker 2: The night before the bachelorette party, my best friend came
Speaker 2: from out of town. We were doing karaoke. I remember
Speaker 2: doing one or two songs and I couldn't stand anymore.
Speaker 2: So basically everyone else I was like, just enjoy yourself.
Speaker 2: I found a couch in the airbnb and I was
Speaker 2: just laying on it and people would come sit on
Speaker 2: the floor and talk to me while I'm laying and
Speaker 2: they started to see how serious the situation was. I
Speaker 2: literally did not sleep one minute during that night. I
Speaker 2: was just wide awake, and I was like, this is
Speaker 2: so frustrating because I wanted to feel better for it,
Speaker 2: and then my neck brace, my back brace, eyes bogged out, completely,
Speaker 2: violently shaking all night, stomach upset all night before my wedding.
Speaker 2: When my friend was in town, I was like, I
Speaker 2: have to show you this amazing thing. Look what I
Speaker 2: can do. And I turned my neck like one inch
Speaker 2: to the left and he was like, is that amazing.
Speaker 2: He's like, I'm really upset that you think that's amazing.
Speaker 1: Now, almost a decade after her panic attacks began in college,
Speaker 1: Michelle is suffering from gastro intestinal issues, unbearable dizziness, tremors, insomnia,
Speaker 1: and months after the dramatic day at our chiropractor's office,
Speaker 1: she is still struggling to move. Was there ever a
Speaker 1: moment that you can remember that you thought, I just
Speaker 1: can't continue to live like this.
Speaker 2: I had taken my computer chair realchair to the bathroom
Speaker 2: and I was standing in the mirror, holding on and
Speaker 2: it was one of the first times I was like
Speaker 2: standing up, and I just remember looking at myself and
Speaker 2: I said out loud, there's no way you're going to
Speaker 2: make it through this, just just there's no way. This time.
Speaker 2: I know you've done it. You've done it before you
Speaker 2: did the weight loss thing, you did the panic attack thing,
Speaker 2: You've done it. It's not this time, You're not going
Speaker 2: to make it.
Speaker 1: It sounds like you were at your breaking point that
Speaker 1: something just had to give.
Speaker 2: Some other part of me, like inside of me, just
Speaker 2: said and you're never going to say that again. But
Speaker 2: it took that rock bottom moment of true hopelessness for
Speaker 2: like that other side of me to come rescue me.
Speaker 1: Honestly, it was at that moment Michelle made it her
Speaker 1: mission to get to the bottom of this medical mystery.
Speaker 1: She began her research, a deep dive into everything she
Speaker 1: could find that could be a clue, putting her knowledge
Speaker 1: of science and the body to work. So from Pillow Mountain,
Speaker 1: you know, you're collecting all these bits and pieces and components.
Speaker 2: This is almost like a CSI. It was literally like that.
Speaker 2: There was like maps all over my apartment. I was
Speaker 2: trying to figure out what this is.
Speaker 1: And then at some point you turned to one of
Speaker 1: my favorite places in the world.
Speaker 2: Reddit read It was my hero during this time, and
Speaker 2: I started to find language for what was going on
Speaker 2: with me, and that to me was like the most
Speaker 2: liberating thing. I'm like, Okay, you have these words, Michelle.
Speaker 2: We have this word hypermobility somewhere in the mix, right,
Speaker 2: we have this weird pots thing. I had a doctor
Speaker 2: test in twenty nineteen pre covid and said you have
Speaker 2: really high histamines, and to me that meant like I
Speaker 2: was like, I don't have any skin issues. I don't
Speaker 2: have any seasonal allergies. It didn't mean as much to
Speaker 2: me then, but then I started to again put these
Speaker 2: pieces together. So that's where I started to pull that
Speaker 2: word histamine to the front of mind, because I also
Speaker 2: noticed when I would take pepsid, my tremors would completely stop.
Speaker 2: And I saw one study that I literally got it
Speaker 2: from Reddit, which is funny enough, on long COVID, and
Speaker 2: this was a complete breakthrough moment for me.
Speaker 1: What had the study found?
Speaker 2: It was about hospitalized patients. They studied sixteen hospitalized patients
Speaker 2: and they put them on eighty milligrams of fomodidine pepsid,
Speaker 2: and they found that those who were on the femodidine
Speaker 2: had an eighty percent reduction in long COVID symptoms. And
Speaker 2: I was like, why are they giving them an acid
Speaker 2: block drug for COVID until I realized that pepsid was
Speaker 2: an antihistamine. I also noticed when I would take pepsid,
Speaker 2: my tremors would completely stop. That was one of my
Speaker 2: biggest aha moments.
Speaker 1: So you then approach a doctor and you specifically asked
Speaker 1: for a histamine serum test, yes, and it came back
Speaker 1: sky high. When you say sky high, give me an
Speaker 1: idea of.
Speaker 2: You want it to be less than two. Mine was
Speaker 2: like fifteen, which I was really excited about, honestly because
Speaker 2: of the validation it gave me. The third piece of
Speaker 2: my puzzle was the pots piece. So I did have
Speaker 2: a colleague who's a cardiologist, do the tilt table test
Speaker 2: with me, and I failed beautifully.
Speaker 1: With the help of her expert Internet sleuthing skills, Michelle
Speaker 1: began to realize that her range of symptoms pointed in
Speaker 1: one clear direction, and.
Speaker 2: That's where I figured out MCS was the root for
Speaker 2: me of the rest of what was going on.
Speaker 1: Mast cell activations also known as MCASS. After seventeen years
Speaker 1: of questions, Michelle finally had some answers, but the answers
Speaker 1: would only continue to evolve. Doctor Tanya Dempsey is an
Speaker 1: expert in chronic diseases, autoimmune disorders and one of the
Speaker 1: world's leading experts on mass cell activation syndrome, a new
Speaker 1: frontier of medicine that is still very much in its infancy.
Speaker 1: How do you explain mast cell activation syndrome?
Speaker 5: So a mast cell is a white blood cell. So
Speaker 5: it's a white blood cell.
Speaker 4: They are there to.
Speaker 5: Help fight Now, a lot of people may know that
Speaker 5: white blood cells circulate in the blood, and the mast
Speaker 5: cell is a white blood cell that doesn't circulate in
Speaker 5: the blood. It actually lives in the tissues of our bodies.
Speaker 5: It's in our skin, in our respiratory track, in our
Speaker 5: GI tract. They are in the tissues and the parts
Speaker 5: of the body that interface with the environment, all these
Speaker 5: things that I just mentioned. The skin, right is write
Speaker 5: in contact with the outside world. The GI track, when
Speaker 5: you eat food from the environment.
Speaker 4: It's in contact. Right.
Speaker 5: Normal mass cells are really really important in helping fight infection.
Speaker 5: One of the ways that mass cells react and try
Speaker 5: to help is that they explode.
Speaker 4: We call it degranulate.
Speaker 5: They manufacture these different chemicals that we call them mediators,
Speaker 5: and these different chemicals are released from the mass cell
Speaker 5: in an attempt to quote unquote fight off whatever they're
Speaker 5: trying to fight.
Speaker 2: They're always looking to assess for threats, whether they're perceived
Speaker 2: or realized, and they will send out messages to the
Speaker 2: rest of the body on what to do in a
Speaker 2: time of threat. The problem with mass Sell autivation syndrome
Speaker 2: is that those messengers have their own problems. When there's
Speaker 2: too many of them, they cause their own problems. So,
Speaker 2: while we need our mass cells to help us during
Speaker 2: times of injury, during times of threat, if we have
Speaker 2: too many of those messengers floating around, they create new symptoms,
Speaker 2: and that is the experience of having mass Sell activation syndrome.
Speaker 5: One of the chemicals that mass tells make is called histamine.
Speaker 2: The reason we talk about histamine a bit more than
Speaker 2: the rest is because they tend to cause one of
Speaker 2: the most dramatic symptom sets. And one of the biggest
Speaker 2: functions of histamine is to cause something called vasodilation. Vasodilation
Speaker 2: is the widening of our blood vessels.
Speaker 1: How is that connected to mcasts.
Speaker 2: So if we want to get nutrients, if we want
Speaker 2: to get immune cells to a sight of injury, we
Speaker 2: open up those blood vessels and we can send all
Speaker 2: those messengers through the problem is if your blood vessels
Speaker 2: are left open, well, we don't get blood and venus
Speaker 2: return back to our brain and our heart. So this
Speaker 2: piece is what connects one of the many ways POTS,
Speaker 2: this form of dysautonomia and mass altivation, cinder and histamines.
Speaker 2: If someone is in a hot shower, suddenly feel dizzy,
Speaker 2: look down at their legs and notice there's like red
Speaker 2: splotches on their legs, and then they notice their heart
Speaker 2: starts to pound and they're also holding onto the walls.
Speaker 2: What happens is in this instance is that both histamines
Speaker 2: and heat are vasodilators. So what happens is your blood
Speaker 2: is dropping down causing blood pooling in your legs, and
Speaker 2: then your heart and your brain are going can you
Speaker 2: send some blood up here, please, And so your heart
Speaker 2: starts pounding really fast. You feel the dizziness because there's
Speaker 2: not enough blood flow to your brain, and that's where
Speaker 2: that symptom set happens. The other kind of component that
Speaker 2: ties those two together is that POTS is a form
Speaker 2: of dis automomia. And this is really really hard concept
Speaker 2: for people. Can you explain why, Lauren, if your heart
Speaker 2: was pounding out of your chest, what kind of doctor
Speaker 2: would you go to?
Speaker 4: I go to the cardiologists.
Speaker 2: Do you go to a car bologists. Pots is a
Speaker 2: form of dysautonomia that means the dysfunction of the autonomic
Speaker 2: nervous system. So it's coming from your brain and your nerves.
Speaker 2: It's not coming from your heart. That's the hard part
Speaker 2: with histamine issues, right if you're having all these insomnia symptoms,
Speaker 2: if you're having migraines, you're going to go to a neurologist.
Speaker 2: The problem with histamines issues and issues like pods is
Speaker 2: that the symptoms don't come from the system that you expect,
Speaker 2: and that's why they're so challenging to diagnose.
Speaker 5: So many patients are disbelieved because they come in and
Speaker 5: they have all.
Speaker 4: These complaints, but they look fine.
Speaker 1: It took Michelle years to get diagnosed, and it was
Speaker 1: like the symptoms built over time, almost like a snowball
Speaker 1: gaining speed down a hill. Is that common?
Speaker 5: So we know that there must be some genetic or
Speaker 5: epigenetic phenomena happening. What we think happens is that there's
Speaker 5: a series of events that over time makes it worse.
Speaker 5: Could be a trauma of some kind, could be infection,
Speaker 5: you know, severe strep throats, lime disease, living in mold
Speaker 5: and Usually it's an escalation of symptoms with each trigger,
Speaker 5: and so over time people get worse and worse.
Speaker 4: Most of the patients that.
Speaker 5: I see really didn't go into the major flair until
Speaker 5: later in life.
Speaker 1: And that's exactly what happened for Michelle. Once you knew
Speaker 1: that you were dealing with mcast, how did you go
Speaker 1: about getting treatment? How did you go about learning to
Speaker 1: heal yourself?
Speaker 2: So once I figured out those three pieces for me, MCAST,
Speaker 2: pots and hypermobility, I wanted to understand what were people
Speaker 2: experiencing and talking to practitioners. Then I started to put
Speaker 2: together the new battle plan and that anti histem medications,
Speaker 2: antihistamine supplements. It included dropping a lot of the supplements
Speaker 2: that I may have reacted to in the past, dropping
Speaker 2: an detox protocols, no fonsaunas, nothing that would push detoxification
Speaker 2: for me. And then it also took reconditioning my body
Speaker 2: and reconditioning my brain.
Speaker 3: I think it was just like a light bulb went
Speaker 3: off and she was like finally, like I get it now,
Speaker 3: you know. That's the thing is Michelle is a dietitian,
Speaker 3: but really she's more of a scientist than anything. And
Speaker 3: so she was like, Okay, now that I understand the
Speaker 3: mechanisms of what's happening, I can fix it.
Speaker 5: The standard first step is maybe using some kind of antihistamine.
Speaker 5: There are lots of patients where histamine is not an
Speaker 5: issue for them, but there are enough people who get
Speaker 5: some benefit from antihistamines that that's usually, you know, kind of.
Speaker 4: The first step.
Speaker 5: One of the exciting things is we just published on
Speaker 5: the use of GLP one receptor agonists in the use
Speaker 5: of mascinell activation syndrome. Those are weightless drugs, but at
Speaker 5: low dose microdosing, they have massive stabilizing properties, and so
Speaker 5: that's become like a really interesting, almost miraculous treatment for
Speaker 5: some patients.
Speaker 1: Your sister told me that she really emphasizes hope as
Speaker 1: one of the pillars of her teaching. Why is that
Speaker 1: so in keeping with your little sister and what are
Speaker 1: you most proud of her in terms of how she's
Speaker 1: handled her diagnosis and stepped into her advocacy.
Speaker 3: I don't think anyone else could do what she did.
Speaker 3: You know, hope is especially when you're dealing with a
Speaker 3: chronic condition like this, it's exhausting. But she wants people
Speaker 3: to know there is a way to live, be at
Speaker 3: peace with it, and a way to support yourself, and
Speaker 3: there are other people out there that are experiencing the
Speaker 3: same thing, and that you're not alone and one bad
Speaker 3: day doesn't have to define your whole week or your
Speaker 3: whole month. More than anything, I think, hope is what
Speaker 3: Michelle gives people.
Speaker 1: Only a few years out from learning about mcass, Michelle
Speaker 1: has made it her mission to help others combat this
Speaker 1: emptoms and find ways to live life again. You've turned
Speaker 1: your personal experience into your work. In twenty twenty four,
Speaker 1: you launched the Highly Sensitive Body Hub. What inspired you
Speaker 1: to create it and what do you hope people will
Speaker 1: find there?
Speaker 2: Unlike any other condition in the world, education about these
Speaker 2: syndromes and conditions is health changing. These are nervous system
Speaker 2: based conditions, so fear drives these conditions, so understanding heals
Speaker 2: them in some way. I found that one of the
Speaker 2: most liberating moments outside of this mindset change was understanding
Speaker 2: I have to understand in order to heal. So what
Speaker 2: I did with the Highly Sensitive Body Hub I kind
Speaker 2: of cluster hypermobility, long covid mass selutivation syndrome d pots
Speaker 2: as people living in highly sensitive bodies. So I created
Speaker 2: the Highly Sensitive Body Hub with thirteen other incredible practitioners
Speaker 2: who came in and it's just video education and how
Speaker 2: do we draw those tools together, draw the understanding together.
Speaker 2: And they are just tangible strategies using videos, handouts. There's herbalism,
Speaker 2: there's supplements, there's food strategies, and a lot of nervous
Speaker 2: system strategies as well exercise strategies. I always say, living
Speaker 2: in a highly sensitive body is like playing checkers. When
Speaker 2: your body is playing chess. You just have to learn
Speaker 2: the game. And once you learn the game, your life
Speaker 2: is completely different.
Speaker 1: What are you most excited about and hopeful for in
Speaker 1: terms of future treatment and research with mcasts.
Speaker 2: We're starting to get research about this triad MCAST pots
Speaker 2: and hypermobility, and it is so invigorating to understand the
Speaker 2: connection between the connective tissue and the nervous system and
Speaker 2: the immune system. People are really starting to understand that
Speaker 2: MCAST is so much more than just seasonal allergies. It's
Speaker 2: so much more than that anti histamine pill.
Speaker 1: Doctor Dempsey also sees hope in the future comes to
Speaker 1: the further understanding of mcasts.
Speaker 5: We're really just at the tip of the iceberg. We
Speaker 5: have so much more to learn, and I think that's good, right.
Speaker 5: I think there are a lot of people suffering and
Speaker 5: it feels overwhelming, like we're never going to get anywhere.
Speaker 5: And what's exciting to me is that the conversation is
Speaker 5: starting to grow, the government is starting to become interested,
Speaker 5: the various research centers are starting.
Speaker 4: To become interested.
Speaker 5: Whether they're studying MCAST directly or they're studying the comorbidities,
Speaker 5: it doesn't matter to me.
Speaker 4: That's really exciting, and I think.
Speaker 5: There are a lot of new technologies, new treatments like
Speaker 5: GLP one that is changing things for patients beyond what
Speaker 5: we could have imagined. So I think this is an
Speaker 5: exciting time and I think the next two years we're
Speaker 5: going to have better treatments, better ways to diagnose. And
Speaker 5: for me, that's the name of the game. We just
Speaker 5: got to keep at this to help as many people
Speaker 5: as we can.
Speaker 3: It's such a.
Speaker 2: Corny thing that everyone says, but healing is not linear,
Speaker 2: and sometimes your symptoms will be very bad and we're
Speaker 2: going to ride those symptoms and then there will be
Speaker 2: a day where you will forget that those symptoms were
Speaker 2: so bad, and forget how it was for patients.
Speaker 5: What I always want to emphasize is that they know
Speaker 5: themselves if they know there's something wrong, but they're not
Speaker 5: being validated, the medical professionals are not believing them.
Speaker 4: Move on.
Speaker 3: No one knows you like you know you. So she
Speaker 3: knew there was something wrong, and she was just like, no,
Speaker 3: I don't accept that. I don't accept that there's nothing
Speaker 3: that can be done about it.
Speaker 2: There is not one person living with complex chronic illness
Speaker 2: who I do not have one hundred percent hope for.
Speaker 1: What would you say if you could travel back in
Speaker 1: time and look into the face of the woman who
Speaker 1: was crawling five blocks to get to urgent.
Speaker 2: Care she did exactly what she needed to do. I
Speaker 2: would say like, I'm very proud of you that you
Speaker 2: made it to the urgent care of this day, and
Speaker 2: I would just say, like always, Michelle, believe yourself over
Speaker 2: anyone else. If you can make it through this, which
Speaker 2: I know you will, we'll be able to help other
Speaker 2: thousands of people. So it'll be worth it. I promise
Speaker 2: it'll be worth it. My name is Michelle Shapiro and
Speaker 2: it took me seventeen years of symptoms before realizing that
Speaker 2: I had mass sele extivation syndrome MCAS.
Speaker 1: You can follow Michelle on social media at Michelle Shapiro
Speaker 1: RD and on her website Michelle Shapiro RD dot com.
Speaker 1: Doctor Tanya Dempsey can be found on Instagram at doctor
Speaker 1: Tanya Dempsey MD and online at doctor Tanya Dempsey dot com.
Speaker 1: Coming up on next week's episode of Symptomatic, Sarah Marshall
Speaker 1: knew from only a few months under her fourth daughter
Speaker 1: Phoebe's life, that's something was wrong. By the time Phoebe
Speaker 1: was six, Sarah began to fear for her daughter life.
Speaker 6: She was not in her seatbelt, literally like contorting and writhing,
Speaker 6: and she just clearly could not get comfortable and the
Speaker 6: pain was so severe, and I remember her thanking me
Speaker 6: for taking care of her, as if she thought she
Speaker 6: was gonna die.
Speaker 1: Phoebe underwent countless tests, multiple surgeries, and was in and
Speaker 1: out of the hospital for years. Her health was declining
Speaker 1: and her medical team could not tell them what was wrong.
Speaker 7: You know, at that age, specifically, you see doctors as
Speaker 7: like literally your heroes. They're supposed to know everything, like
Speaker 7: they are the smartest of the smartest, and so when
Speaker 7: people were like, oh, I don't know, that was like, oh,
Speaker 7: what do you mean you don't know?
Speaker 1: As always, we would love to hear from you. Send
Speaker 1: us your thoughts on this episode, or share a medical
Speaker 1: mystery of your own at Symptomatic at iHeartMedia dot com
Speaker 1: and please rate and review Symptomatic wherever you get your podcasts.
Speaker 1: We'll see you next time and until then, be well.
Speaker 1: Symptomatic a medical mystery podcast, is a production of iHeartMedia's
Speaker 1: Ruby Studio. Our show is hosted by me Lauren Bright Pacheco.
Speaker 1: Our executive producers are James Foster, Matt Romano, and myself.
Speaker 1: Our supervising producers are Ryan Ovadia, Haley Aliah Erickson, and
Speaker 1: Daniel Ainsworth. This episode was written by Haley Aliah Erickson
Speaker 1: and edited by Samuel Richardson.